News from Australia

Emerge announces the appointment of a Medical Director:
Recently the Board of Emerge Australia unanimously voted to appoint Dr. Richard Schloeffel OAM to the position of Medical Director. This is a significant appointment that will result in Dr. Schloeffel having oversight of direction regarding clinical programs and our work on ME/CFS Clinical Guidelines among other areas. Dr. Schloeffel will provide a link between patients, Emerge Australia and the wider medical fraternity. In his role as Medical Director, he will also advise the Board on clinical and scientific evidence to underpin program development of Emerge Australia. Dr. Schloeffel will also support the CEO in advocacy and awareness raising activities, both in media and with governments, as well as corporate partners to improve outcomes for those living with ME/CFS and Long COVID.

For the past 24 years Dr. Schloeffel has focused his practice in the understanding and management of Complex and Chronic Disorders. Dr Schloeffel graduated from the University of NSW in 1978. His initial training was in Intensive Care Medicine, followed by Isolated Rural General Practice combining Acupuncture and Integrative Medicine.

He gained a Fellowship in the Royal Australian College of General Practitioners (RACGP) in 1983, a Diploma of Acupuncture and Chinese Medicine from China’s Nanjing College of Traditional Chinese Medicine in 1986 and a Fellowship of the Australian Medical Acupuncture College in 1987.

Dr Schloeffel worked extensively in rural General Practice, and in the developing world, as well as in Europe for 13 years before moving back to Sydney where he currently practices.

Dr Schloeffel was influenced by the HIV/Aids epidemic of the 1980’s and then myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and Fibromyalgia in the 1990’s. He then became increasingly involved in developing diagnostic and management pathways for these misunderstood diseases.

Emerge Australia warmly welcomes Richard to Emerge Australia.
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In my opinion, largely based on a talk I heard him give to an Emerge conference quite a few years ago, Dr Schloeffel is well-meaning but entirely the wrong sort of person to represent a disease community to the medical profession. The fact that Emerge's Board and CEO chose him makes me despair.
 
Hutan said:
Emerge announces the appointment of a Medical Director:


In my opinion, largely based on a talk I heard him give to an Emerge conference quite a few years ago, Dr Schloeffel is well-meaning but entirely the wrong sort of person to represent a disease community to the medical profession. The fact that Emerge's Board and CEO chose him makes me despair.
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I saw that yesterday and my heart sunk. Dr. Schloeffel sells homeopathy at his clinic and dabbles in Lyme disease based on overseas blood tests. His methods are complete pseudoscience. Anne wilson compared me/cfs with adrenal fatigue in her first email as ceo. I fear all the good work done by Dr Heidi Nicholl will go down the drain. Hope I am wrong.
 
How much support do you think we would get? Probably a lot of ME/CFS patients are very happy with the kind of 'integrative' approach he takes. And even for people who are concerned about Schloeffel as Emerge's Medical Director, some of them, possibly even me, might find a petition specifically targeting an individual, with all the promotion of it that would be required, too confrontational. I doubt that other ME/CFS institutions would want to interfere in Emerge's appointments. ANZMES has their own issues with a Medical Advisor with questionable beliefs, so is unlikely to point the finger at another organisation.

We desperately need someone to take some leadership on getting rid of ME/CFS doctors applying nonsense approaches, but it's hard to see where the leadership would come from. Emerge is doing the exact opposite, effectively endorsing unscientific medicine.

When there was the problem with the MEA patron appointment, people speaking up on social media and writing letters was effective.
 
Hutan said:
Emerge announces the appointment of a Medical Director:


In my opinion, largely based on a talk I heard him give to an Emerge conference quite a few years ago, Dr Schloeffel is well-meaning but entirely the wrong sort of person to represent a disease community to the medical profession. The fact that Emerge's Board and CEO chose him makes me despair.
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Don't have much experience of Emerge Australia but I can't remember anything negative- they have run excellent conferences and I'm sure done a lot more - what's happened?
 
The CEO who drove a lot of the positive change left to take up a new job. The new CEO didn't know about ME/CFS and seems to be happy to take advice about what it is and what should be done about it from 'experienced ME/CFS doctors'. I guess in most other medical conditions, that would be a reasonable thing to do, but it is dangerous in ME/CFS. I have no idea what is going on in the Emerge Board that has allowed this to happen.
 
Hutan said:
The CEO who drove a lot of the positive change left to take up a new job. The new CEO didn't know about ME/CFS and seems to be happy to take advice about what it is and what should be done about it from 'experienced ME/CFS doctors'. I guess in most other medical conditions, that would be a reasonable thing to do, but it is dangerous in ME/CFS. I have no idea what is going on in the Emerge Board that has allowed this to happen.
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Yea sometimes people appoint someone on the basis of something they did elsewhere - without considering the context. Speculation of course.
 
ABC News 24 had a segment yesterday on Long Covid. The doctor interviewed was typically clueless and referred to ME/CFS as "chronic fatigue" (as did the interviewers) for the whole interview. He claimed that the reason that we know so little about ME/CFS is just lack of funding rather than acknowledging the prejudice and dismissal of the medical community.



Not long after, they interviewed an ME patient and advocate, Natalia Hodgins, who effectively and eloquently refuted everything that had been said:



I hope this can be shared far and wide as it really deserves a bigger audience.

(Facebook links don't show up for me on the forum due to ad-blocking settings, so I'll put a link to it here as well in case. Let me know if it doesn't work.)

Edit: here's a snippet of her interview on twitter for easy sharing.
 
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Email from Griffiths University/NCNED about a forthcoming LDN trial:
(I wonder who has funded this)
Dear Supporters,

NCNED is inviting patients around South-East QLD and Northern NSW formally diagnosed with ME/CFS and healthy volunteers to participate in an important investigation to continue NCNED’s research in calcium receptors, pharmaceutical intervention, and neuroimaging.

This upcoming investigation will hope to allow better understanding of the potential benefit of low dose naltrexone (LDN) in ME/CFS patients.

We are seeking volunteers for the following research groups:
  1. ME/CFS patients who intend to commence LDN.
  2. ME/CFS patients who already routinely take LDN.
  3. ME/CFS patients who do not routinely take LDN.
  4. Healthy volunteers: Participants who report no health concerns.

Involvement:
This research is highly important and aims to track patient responses to LDN. For this reason, participation in this research will include the following:
  1. Donation of 84ml of blood at 0 and 3 months.
  2. Attend MRI appointments at 0 and 3 months.
  3. Complete a medical history and validated ME/CFS questionnaire at 0 and 3 months.
The staff at NCNED are available to assist with the requirements of participation if there are any concerns in this project. Please note, participants are free to withdraw at any time without penalty.

Inclusion criteria:
  • Participants aged 18 to 65 years old
  • Non-smoker
  • No current diagnosis of serious chronic illness, e.g autoimmune, cardiovascular disease, diabetes, or cancer.
  • Not currently taking medications used for inflammation, depression/anxiety, blood pressure or arrhythmias, hormone replacement, epilepsy.
  • Able to travel to the University of Queensland Neuroimaging department for MRIappointments. Please contact NCNED if there are concerns regarding travel.
  • Able to travel to your nearest designated blood collection centre for blood donations. Please contact NCNED for approved collection locations.
Participants will receive a $10 Coles e-voucher and enter the draw to win $50, $75 or $100 Coles e-voucher drawn half-yearly. To participate in MRI appointments, it is necessary to travel to UQ, St Lucia campus. Please contact us to discuss travel options to St. Lucia, Brisbane.

If you are interested in participating, please contact NCNED on (07) 567 89283 or emailncned@griffith.edu.au.
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We have an LDN thread here.
Making a case for LDN (Low Dose Naltrexone)
 
Art Vandelay said:
ME/CFS Australia have called for Australians with ME/CFS to lodge a submission to the Disability Royal Commission. They have produced a guide to help with preparing submissions:




The Royal Commission's submission page is here:
https://disability.royalcommission.gov.au/share-your-story/make-your-submission

I believe that submissions will be open for some time yet but will update if I discover a deadline. [Edit: it may be as late as Feb 2022]
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I just checked that link:

The final date for submissions is 31 December 2022.
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Yeah, the photo of the pool in the article reminds me of rather severe upper back pain I would get from walking in chest-high water close to body temperature.

Pressing my body against the weight of water while walking zombie-slow resulted in enormous pain afterward that lasted a week.

So, yes, every activity must be scrupulously monitored for "side effects."
 
This is a sympathetic article about severe ME and the difficulty in getting support and medical care in Australia:

Myalgic encephalomyelitis leaves 20yo woman in ‘semi-comatose’ state

The last photo Sally Andrews and John Engel have of their family all together was in front of an Adelaide beach during an interstate trip in 2018.

Ms Andrews is standing on one side, Mr Engel on the other, and between them are their children Ryan and Ella, with her head slightly tilted onto her brother’s shoulder. The clouds behind them are tinged with an oncoming sunset and the family are smiling at the camera.

Unknown to them then, it was one of the last times Ella was able to move relatively freely, before she became bedridden.
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I found this very odd:

Taken in 2018, Ella was two years into living with the condition myalgic encephalomyelitis (ME). While the condition is often grouped with chronic fatigue syndrome (CFS), Ms Andrews is frustrated at the lack of education and awareness of the two separate diseases.
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There's no mention of Long Covid in the article, but LC is largely invisible in Australia at present.

edit: her Dad runs a Facebook page for her which does a good job of depicting severe ME: In it for Ella.
 
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From the Emerge Newsletter - March edition
Membership of Medical & Scientific Advisory Committee
In our last edition we were delighted to announce the appointment of our Medical Director Dr. Richard Schloeffel and also the membership of our Medical & Scientific Advisory Committee (MSAC).

After feedback from some of you, we have decided to do a call for nominations for two further individuals to join our MSAC. We are looking for one person with ME/CFS (not employed by Emerge Australia); and one Carer not employed or on the Board of Emerge Australia. If you are interested please email me on: ceo@emerge.org.au and we will send you further information.
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Not really news, more an anecdote. After having an ear infection for over 2 months, I finally got up courage to go get some antibiotics. I saw a GP intern, she was doing a 6 month placement in the clinic, not her first.

She didn't know what ME/CFS was (I had had to fill out a new patient record of illnesses), but had heard of chronic fatigue syndrome. She had not been taught anything about it, well, nothing she was telling me, and said that she'd never come across anyone with it. She had heard of Long Covid, but not in her training. She didn't know much about it, didn't know anything about its management. This is a new GP, completing her training, and no one has told her to watch out for signs of Long Covid in the patients she sees, or given her any ideas on how to manage it.
 
Hutan said:
Not really news, more an anecdote. After having an ear infection for over 2 months, I finally got up courage to go get some antibiotics. I saw a GP intern, she was doing a 6 month placement in the clinic, not her first.

She didn't know what ME/CFS was (I had had to fill out a new patient record of illnesses), but had heard of chronic fatigue syndrome. She had not been taught anything about it, well, nothing she was telling me, and said that she'd never come across anyone with it. She had heard of Long Covid, but not in her training. She didn't know much about it, didn't know anything about its management. This is a new GP, completing her training, and no one has told her to watch out for signs of Long Covid in the patients she sees, or given her any ideas on how to manage it.
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For this particular GP it’s good for subsequent patients that she came into contact with you @Hutan Obviously big issue for medical education generally tho
 
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